A Waipapa Taumata Rau, University of Auckland-led study has secured nearly $1.2 million in Health Research Council (HRC) funding to improve paediatric palliative care services for children and their families across Aotearoa.
Led by Dr Gemma Aburn, Dr Tess Moeke-Maxwell and a team of clinicians and researchers (with cultural guidance provided by the team’s Te Ārai Kāhui), the 36-month project Pae Herenga: Informing service development of paediatric palliative care will deliver the largest study of paediatric palliative care ever undertaken in New Zealand.
It will generate the first comprehensive national dataset capturing whānau and family experiences for both Māori and non-Māori.
The research addresses a critical need, with more than 3,000 children in Aotearoa living with life-limiting or life-threatening conditions requiring palliative care.
Dr Aburn says the study centres the voices of families who are often underrepresented in health system design.
“Whānau and families hold deep knowledge about what good care looks like, especially in some of life’s most challenging moments,” she says.
“This research is about listening carefully to those experiences and ensuring they directly shape how services are developed in the future.”
Putting whānau at the centre of care
The study will take a co-creation approach, working alongside participants to develop resources that support families caring for a child with palliative care needs.
Using creative arts methodologies, the team will produce accessible resources that reflect the diverse realities of families and communities.
Dr Moeke-Maxwell says this approach recognises that care extends beyond clinical settings.
“Palliative care is not just about medical support — it is about relationships, connection, and supporting whānau in ways that honour their values and lived experiences,” she says.
“By co-creating resources with families, we can ensure they are meaningful, practical and grounded in what people actually need.”
These resources will be made available across multiple formats and used throughout all levels of paediatric palliative care.
Improving care and reducing system pressures
In addition to improving family experience, the research is expected to deliver broader system benefits.
Better service design can reduce avoidable hospital admissions, shorten hospital stays, and minimise distressing or unnecessary interventions — improving outcomes for children while reducing healthcare costs.
Dr Aburn says embedding whānau perspectives into service development is key to achieving these outcomes.
“When services are aligned with the realities of families, care becomes more responsive, more effective and more sustainable,” she says.
Strengthening workforce capability
The findings will also inform health professional education, supporting clinicians to reflect on practice and adopt more whānau-centred approaches.
Dr Moeke-Maxwell says ensuring a strong whānau voice within training is essential.
“Health professionals want to provide the best possible care, and hearing directly from families helps deepen understanding and strengthen practice,” she says.
“This work contributes to building a system that is more responsive, compassionate and culturally grounded.”
A significant investment in person- and whānau-centred care
As the largest study of its kind in Aotearoa, Pae Herenga marks a major step forward in understanding and improving paediatric palliative care.
By placing whānau voices at the centre, the research aims not only to enhance care experiences, but to reshape how services are designed — ensuring they truly meet the needs of children and families now and into the future.
Waipapa Taumata Rau, University of Auckland media release.
